WBC Count: 50.79

            I hadn’t mentioned the phase one clinical trial David was scheduled to start today; I didn’t want to get anyone’s hopes up, including mine. That’s right, scheduled: it’s not going to happen today. We spent all day at Cox 120 yesterday, investigating the pain in David’s arm. Besides the ultrasound, which revealed multiple blood clots, they drew blood (usually only done Monday and Thursday), which showed the WBC count had risen, from 24.42 on Monday to 50.79 on Wednesday. Yup, doubling in 2 days. The protocol of the new study requires 48 hours off of hydroxyurea before the initial blood draw. Dr. Fathi felt would be dangerous yesterday, given David’s history of quickly multiplying white blood cells when he’s off hydroxyurea.

            So, we get the day off tomorrow, but need to go, outpatient, to Lunder 10 Saturday morning for more blood work (since Cox 120 isn’t open on the weekend). David may need transfusions, which he’s been getting quite often lately. They will also decide whether his WBC count is low enough to stop the hydroxyurea for 48 hours. He can take hydroxyurea while in the study: that was not true for the last clinical trial.

Blood clots

Hah! Bet you didn’t think you’d hear from me twice today.

David complained of pain in his arm, near his PICC (IV) line. (He has had a center line port in his chest for blood draws and chemotherapy for a year, but the staph infection two weeks ago developed around the port, so they had to surgically remove it and switch to a PICC line in his left arm.) So, we had an unexpected visit to MGH (outpatient at least) for an ultrasound. He has several clots in two different veins. He’ll start on a blood thinner, given daily by hypodermic needle into his belly. He’ll do that at home. Right now they’re giving him platelets proactively. His platelet count yesterday was 23, which has been fine, but with the blood thinner they want it to be near 50. They’ll check it twice a week and give platelets as needed.

68% to 88% Blasts

            Here are the latest blood counts:

15-Apr-2015	67.68	88.5%	2.03	22.70	21.00
16-Apr-2015	47.07	72.8%		23.20	36.00
17-Apr-2015	35.86	80.5%	2.44	22.70	24.00
19-Apr-2015	23.55	84.0%	0.40	26.20	18.00
21-Apr-2015	10.67	88.0%	0.00	25.00	8.00
24-Apr-2015	12.39	68.7%	0.22	25.10	15.00
27-Apr-2015	24.42	86.0%	0.00	21.70	23.00

            To clarify: a normal white blood cell count is 4 to 11. Of course, David’s aren’t ‘normal’: the percentage of leukemic blasts in the bloodstream has remained between 68% and 88% since 10 April. The short-term goal is to keep the white counts low. So far the hydroxyurea has successfully done that, however it does nothing to attack the ‘leukemia factory’ in the bone marrow. We hope for another clinical trial that will affect the bone marrow.

            We had a whirlwind visit from Sam, his intended, Savannah, and her sister, Emma. They flew here, arriving at 12:30 a.m. Tuesday morning and headed west this morning at 7 a.m. in Sam’s new-to-him car (my dad’s 2008 Ford Focus). They plan stops in Palmyra, NY, Kirtland, OH, Nauvoo, IL, and Winter Quarters, NE, all LDS Church history sites. They’ll stay with Charlotte in Chicago.

            David is doing well. We all enjoyed a meal last night at Mario’s, the Italian restaurant in Lexington Center. Jim drove everyone to sight-see in Concord. We also visited the site of Sam’s Boy Scout Eagle project. He organized a team to improve a walking path by laying down ‘crusher run’: stone dust and pebbles of various sizes. Most of the stone has sunk into the ground, but the path is still better than it was before the project. Maybe the town can find another prospective Eagle Scout.

            Spring is slow coming. The forsythia is blooming and my hyacinth are out.

WBC 11

            David’s white blood cell count has continued to fall. It was about 11 today. We’ll meet with Dr. Fathi on Monday to discuss our options at this point, since he’s disqualified from the CPI-0610 clinical trial.

Home again, home again, jiggety jig

David came home from the hospital this afternoon. He carries an IV pump in a shoulder bag: he’ll be on the IV antibiotic for 2-4 weeks. We ate supper together and enjoyed a phone call from Sam, who’s getting married in six and a half weeks!

Hydroxyurea is Bringing the Counts Down

            The good news is that because of the hydroxyurea David’s white blood cell count has dropped while his hematocrit has been holding fairly steady. He had a platelet infusion yesterday, which shows in the count.

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells)	Platelets
12-Apr-15	39.56	77.0%	0.79	21.90	10.00
13-Apr-15	41.60	82.0%	0.83	20.90	33.00
14-Apr-15	66.95	74.9%	1.21	23.50	30.00
15-Apr-15	67.68	88.5%	2.03	22.70	21.00
16-Apr-15	47.07	72.8%		23.20	36.00

            The bad news is that because of the hydroxyurea, David is disqualified from continuing the CPI-0610 clinical trial.

            David’s still inpatient, but for the first time in about a week he’s got an appetite and about to try some solid food.

Staphylococcus aureus: Blood Infection

David had not been feeling well for the past week. On Friday, 10 April 2015, he was admitted inpatient to Lunder 10 for stomach pain. Since then he’s been on a few IV antibiotics, including vancomycin. Trivia fact for the day: vancomycin was first isolated in 1953 at Eli Lilly & Co. from a soil sample collected by a missionary in the interior jungles of Borneo. It is a naturally occurring antibiotic made by soil bacterium.

A blood culture shows a staphylococcus aureus in the blood. 20% of healthy people have staphylococcus aureus on their skin and/or nasal passages. Because of David’s leukemia, his immune system is very poor and he’s at risk for infections of all types. The normal course of treatment is 2 to 4 weeks of antibiotic via IV. This can be done at home. At this time he is receiving Nafcillin and Flagyl via IV. He’s been taking Flagyl in pill form; now he’s receiving it via IV.

He also has an occlusion (partial obstruction) in his small bowel. It seems to be slowly resolving, but the infectious disease team is monitoring this carefully.

The blood counts are not good. His white blood cell count has quadrupled in 3 days. April 8^th was the last day he was allowed to have hydroxyurea and stay on the clinical trial. As you can see, the white blood counts started rising the next day.

Transfusions are keeping his hematocrit and platelets in the ‘normal’ range for leukemia patients (which is very low compared to healthy people).

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells)	Platelets
26-Mar-15	36.29	72.0%	2.18	20.00	23.00
31-Mar-15	18.62	72.0%	2.05	27.70	12.00
2-Apr-15	10.86	68.0%	0.98	25.80	12.00
6-Apr-15	4.91	40.2%	0.57	22.50	9.00
8-Apr-15	6.57	58.0%	0.20	24.50	9.00
10-Apr-15	10.68	83.0%	0.00	24.40	18.00
11-Apr-15	29.41	72.7%	1.62	20.70	14.00
11-Apr-15	38.14	76.0%	0.00	23.10	15.00
12-Apr-15	39.56	77.0%	0.79	21.90	10.00
13-Apr-15	41.60	82.0%	0.83	20.90	33.00

Day 14 of CPI-0610

Still 12 pills a day, but the clinical research nurse, Aura Ramos says she keeps asking the manufacturer when they’re going to make a larger dose.

Today started with a wake-up at 6:30 a.m., and arrival at MGH of 7:35 a.m. The trip was amazingly smooth: a short delay at the Route 2/Route 16 junction (at Alewife Station) and at Soldiers Field Road. Total time: 40 minutes. Best possible travel time is 25 minutes.

David will have blood draws at ½ hour, 1, 1 ½, 2, 3, 4, 6, and 8 hours He also will have EKGs at 1, 2, 4, and 6 hours, just like Day 1. . Hopefully we’ll be on our way home by 4:30 p.m., just in time for the afternoon commuter traffic.

Here are the latest counts:

Date of Blood Draw (CBC)	White Blood Cell Count	% Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells)	Platelets
9-Mar-15	5.40	30.3%	1.14	20.40	25.00
12-Mar-15	8.93	60.0%	0.54	26.10	19.00
16-Mar-15	18.39	56.0%	1.84	23.60	22.00
19-Mar-15	46.07	67.0%	4.15	21.20	24.00
23-Mar-15	42.43	76.1%	1.44	23.70	22.00
26-Mar-15	36.29	72.0%	2.18	20.00	23.00
31-Mar-15	18.62	72.0%	2.05	27.70	12.00
2-Apr-15	10.86	68.0%	0.98	25.80	12.00
6-Apr-15	4.91	40.2%	0.57	22.50	9.00
8-Apr-15	6.57	58.0%	0.20	24.50	9.00

However, the report of the bone marrow biopsy on 2 April 2015 is bad:

“Primitive cells consistent with blasts are increased and occur in sheets and comprise approximately 90% of the cellularity.”

On 20 November 2014 the blasts were 83% of the total cell count, ‘cellularity’, in the bone marrow; the leukemia is getting worse. The decitabine was attacking the blasts in the bloodstream but not in the marrow.

Thankfully David is feeling relatively well. He and Annie were able to visit R’el, Peter, Xiomara, and Andrew two weekends ago. They watched Andrew all day Monday while Xiomara worked and Andrew didn’t spend the day crying for his mother!

Jim and I enjoyed our trip to the Midwest. We stayed with Charlotte in Chicago and later with Annie in Madison, after her East Coast jaunt. We also drove with Matt to Crawfordsville, IN, where he works as an assistant director of admissions for Wabash College. A day trip to Columbus, IN, where Jim and I lived from a week after R’el was born to 7 weeks before Matt was born (1981 to 1985; Peter’s our Hoosier baby.), included visits with Jim and RaNae Shoaf, Larry and Annette Kleinhenz, and Loretta Green, who watched R’el and Peter each time I swam at the Boys and Girls Club. In southern Indiana the crocuses and daffodils are in full bloom. Back home again in Lexington, there are still some stubborn patches of snow on the ground and this morning I scrapped frost off my windshield. I trust spring will work its way north, slowly.

Looking back on my last two posts, I realized that the day we learned of the decitabine failure was the one year anniversary of David’s call to us from Korea, telling us he had leukemia. He started the ICP-0610 exactly a week later, the anniversary of his arrival at Walter Reed National Military Medical Center (WRNMMC. Remember Wrenmimic? See earliest posts). It’s amazing that he has survived for a year with one of the deadliest forms of leukemia, AML-FLT 3/ITD (acute myeloid leukemia, internal tandem duplication of the FLT3 gene, that is, a mutation of a gene in the bone marrow).

Today is the last day David can take hydroxyurea, because of the clinical trial protocol. The lower white blood count seen on 6 April 2015 is due to the hydroxyurea, which thankfully continues to be effective in lowering the white blood cells in his bloodstream. However, it doesn’t attack the leukemia production in the bone marrow, so eventually it will fail. We pray the CPI-0610 won’t fail. It’s a long shot, a very long shot, but still, it’s a shot.